Re: Our story so far _ Very Long Sorry

September 7, 2007

Dawn,

I have to comment on your MIL's recent discomfort and difficulty walking.

My father, who is 86 and now has severe dementia and Parkinsonism as well as

severe obstructive sleep apnea, recently tried Provigil for about 10 days. He

is typically very sensitive to medications so I started him as 50mg per day

for about a week then introduced 100mg daily. After about three days at

100mg he was clearly more alert during his periods of wakefulness, but still

napped several times morning, noon and night. Rather than disappearing, his

expressions of delusions surprisingly increased. While he has been taking

Namenda

for several years, he has not been taking a cholinesterase inhibitor because

he suffered severe loss of appetite during a several month trial of Aricept

about two years ago. I decided to withdraw the Provigil for now until he

starts a trial of the Exelon patch, which I hope to work out with his

neurologist soon. I am hoping that he combination of the two will work more in

his

favor and suppress the " wide awake drunk " effect that the Provigil alone seems

to be provoking.

The alarming development with Provigil appeared after reaching the 100mg per

day level. He began to experience much more difficulty walking and

complained of hip and back pain. He had an arthritic hip replaced several

years ago,

so the joint pain is a familiar complaint but has become infrequent because

he walks less and less these days. Rather than the typical Parkinsonian

freezing, which usually involves a slight shaking or tremor in his legs when he

tries move his feet, his legs seemed totally rigid, like a tin man who needed

his joints oiled. I actually had to stand right behind him and move his legs

with mine at one point. Checking for reported side effects, I found on one

website " tight muscles or difficulty moving " and back pain both listed as

reported side effects

(_http://www.consumerreports.org/mg/drug-reports/modafinil.htm_

(http://www.consumerreports.org/mg/drug-reports/modafinil.htm) ). I

don't find the same wording in the patient information pamphlet provided with

the medication, although back pain and neck rigidity are mentioned.

If your MIL is showing benefit from the Provigil it is probably worth trying

supportive care to alleviate her discomfort. But if the neck and back pain

as well as the difficulty walking continue, you might want to try backing off

the Provigil to see if those symptoms diminish. I will be very interested

to learn if you discover any other means of addressing these troublesome side

effects so that the Provigil can be used successfully.

Joining you in this never ending balancing act,

KB

************************************** Get a sneak peek of the all-new AOL at

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September 7, 2007

Dawn, I listened with interest, and feeling for your Mother. What a trip she

is on!

Thank you for sharing,

Imogene

In a message dated 9/7/2007 6:12:06 AM Central Daylight Time,

dawnfrrg@... writes:

When I first joined this group I had every intention of telling our

story, but as time went on and I got so engrossed in reading other posts

I allowed myself to feel shy as it's a very long storyâ€¦but I see

that other posts are quite long and I'd like to share our story so

far. This is a post I made in the LBDA forum in April of this year and

as things have moved along a little since then I'll add on at the

end; if that's ok?

My husbands Mum was diagnosed LBD February 2006 after presenting

symptoms of dementia for some time previous. She was involved in a

horrific car accident some years prior to DX and it was suggested that

post trauma and a possible `head injury' could have contributed

to the onset of the dementia???

In the beginning (pre DX) I think the hallucinations were the worst part

of her condition, she constantly had `visitors' in her house and

her main concern was to not leave them alone in her home and that she

would not have enough seats to accommodate us should we wish to visit.

She was able to give graphic accounts of these people which helped us to

understand how terrifying this must have been for her living with the

knowledge that complete strangers were living in her home and she was

unable to get them to leave. This with the fact that her children

couldn't see them, and actively encouraged her not to see them, led

to many a frustration I can tell you. Eventually we explained to her

that although we completely understood that she could see these people,

unfortunately we couldn't but we would do all we could to help her

through itâ€¦was this the way to go?(we know now it was ok to handle

it this way) I'm not sure but for a time it seemed to work and she

was reassured that they couldn't hurt her. She seems able to live

with them around now that we accept that she can see them and that they

don't fight with her. This was awful (that they were fighting with

her) because she got into all sorts of trouble as she tried to escape

these demons, with falls and injuries. We seemed to have had not too

much trouble with the hallucinations of late but my sister-in-law tells

me she was struggling with them last night. We will have to keep a close

eye on things over the next days and contact the CPN to increase the

meds if they persist. Mum currently takes Excelon X2 per day and

Quetiepine x20-mg (since increased to 50mg) in the evening.

Mum shows lots of other what seem to be classic LBD symptoms such as a

shuffling gait, clenching hands (she sometimes think she's dropped

something), delusions, OCD. I think next to the hallucinations, that the

delusions are the worst where mostly family are plotting to send her

away or withdraw their support. It sometimes takes days to reassure her

that this will NEVER happen!

Mum's dearest wish is to stay at home as long as possible and this

is what we're striving for. She currently lives in a warden

controlled bungalow with social services providing agency carers 4 times

a day to assist with personal care, meal prep and med prompts. This is a

necessary part of Mum's care package as every adult member in the

family are committed to full time employment. In an ideal world one of

us would be able to take care of Mum on a full time basis, but for us

unfortunately, this is not an option just right now.

Mum has five main carers my Husbands and his two Sisters and two

Brothers. We seem to have a pretty good system going with rotas in

place, which actually makes Mum's carers smile as they've never

seen that in a family before! It works for us as we're all able to

tell Mum who she's with the next day which eases her mind as she

likes to `keep a grip on things'. Mum is Mediterranean of origin

and doesn't read English so all literary information is read to her

by the family members.

The absolute most important thing for us as a family at the moment is to

keep Mum safe and well cared for in a place that she wants to be. Being

clean and well groomed is very important to her and we will strive for

this to the very end.

UPDATE:

We received fantastic advice from the LBDA forum with regard to

medication and instigated an appointment with her psychiatrist in July

of this year which was very successful and he prescribed Provigil 100mg

per day with a view to increasing to 200mg (which happened last week)

and Exelon increases at later stages. He is aware of this regime of

medication but had never used it before. At first it seemed miraculous

and Mum seemed to help herself a little more, which is very important as

we all still have to work. Her thinking seemed much clearer and she was

instigating conversation and attempting to use the bathroom alone. But

unfortunately this didn't last and she had a couple of falls,

although she was not injured and we think she slipped off the chair onto

her rear rather than falling from standing. The siblings had an

emergency meeting and decided that Mum was no longer safe alone at home

without extra support. Social Services were called and assessments are

in process at the moment to decide the best next course of action.

Meanwhile the Provigil was increased to 200mg and the Exelon to 4.5mg x

2 per day, which last week seemed to have clicked another switch and we

had a fantastic weekend with her (fingers crossed it was looking good).

Then yesterdayâ€¦.My SIL and I were going to shower her last night and

when we arrived she was in a terrible state mentally. She also has

osteoporosis and was complaining of terrible pain in her neck and back,

her speech was confused and she couldn't weight bare nor move her

feet to walk even with both of our support. With Mum the confusion sets

in when something is on her mind and it's then difficult to distract

her until she can get the problem off her chest. I really believe that

something happened between Wednesday evening and yesterday but I'm

at a loss just right now as to what it is. My husband and I will be with

her tonight and hopefully she will be in a better place and more able to

communicate what was bothering her.

Well that's a much shortened version of events so far in our Lewy

journey and I hope it makes sense; I really appreciate that you're

all there and thank you for listening.

Dawn

************************************** Get a sneak peek of the all-new AOL at

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September 7, 2007

KB

Thank you so much for your response; its a very interesting point and

I will pass the information on to my SIL who is Mum's primary cg .

Mum hasn't been particulary sensitive to medication, even Exelon, but

this could be relevant as the desciption you give is very similar to

how we found her last night. Her legs just didn't seem to hold her

weight and she listed to the side rather than having stiffness but

the back and neck pain did seem quite severe.

Sorry to sound dumb but what do you mean by " supportive care to

alleviate her discomfort " ?

We're also waiting for the Exelon patch to become available, her dr

has already mentioned it and I'm sure as soon as he can he will

prescribe it.

This illness is so cruel...and yes such a balancing act.

Dawn

>

> Dawn,

>

> I have to comment on your MIL's recent discomfort and difficulty

walking.

> My father, who is 86 and now has severe dementia and Parkinsonism

as well as

> severe obstructive sleep apnea, recently tried Provigil for about

10 days. He

> is typically very sensitive to medications so I started him as

50mg per day

> for about a week then introduced 100mg daily. After about three

days at

> 100mg he was clearly more alert during his periods of wakefulness,

but still

> napped several times morning, noon and night. Rather than

disappearing, his

> expressions of delusions surprisingly increased. While he has been

taking Namenda

> for several years, he has not been taking a cholinesterase

inhibitor because

> he suffered severe loss of appetite during a several month trial

of Aricept

> about two years ago. I decided to withdraw the Provigil for now

until he

> starts a trial of the Exelon patch, which I hope to work out with

his

> neurologist soon. I am hoping that he combination of the two will

work more in his

> favor and suppress the " wide awake drunk " effect that the Provigil

alone seems

> to be provoking.

>

> The alarming development with Provigil appeared after reaching the

100mg per

> day level. He began to experience much more difficulty walking

and

> complained of hip and back pain. He had an arthritic hip replaced

several years ago,

> so the joint pain is a familiar complaint but has become

infrequent because

> he walks less and less these days. Rather than the typical

Parkinsonian

> freezing, which usually involves a slight shaking or tremor in his

legs when he

> tries move his feet, his legs seemed totally rigid, like a tin man

who needed

> his joints oiled. I actually had to stand right behind him and

move his legs

> with mine at one point. Checking for reported side effects, I

found on one

> website " tight muscles or difficulty moving " and back pain both

listed as

> reported side effects

> (_http://www.consumerreports.org/mg/drug-reports/modafinil.htm_

(http://www.consumerreports.org/mg/drug-reports/modafinil.htm) ). I

> don't find the same wording in the patient information pamphlet

provided with

> the medication, although back pain and neck rigidity are

mentioned.

>

> If your MIL is showing benefit from the Provigil it is probably

worth trying

> supportive care to alleviate her discomfort. But if the neck and

back pain

> as well as the difficulty walking continue, you might want to try

backing off

> the Provigil to see if those symptoms diminish. I will be very

interested

> to learn if you discover any other means of addressing these

troublesome side

> effects so that the Provigil can be used successfully.

>

> Joining you in this never ending balancing act,

> KB

>

> ************************************** Get a sneak peek of the all-

new AOL at

> http://discover.aol.com/memed/aolcom30tour

>

September 7, 2007

Hi Dawn.

Thanks for sharing your story with us. Your mom sounds like my mom in

so many ways, especially the hallucinating part. Your mom is lucky to

have so many caregivers!

FOr over a year, my mom lived in her own apartment with other senior

citizens. She went down to lunch and dinner and occasionally

participated in activities.

This was only possible because she was on 160 mg daily of Geodon, an

atypical antipsychotic that worked wonders for my mom. We tried

Risperdol and Seroquel previously and neither helped. Geodon was a

God-send. My mom was having combative conversations with the " people "

in her basement. It was a constant battle she had with them. We would

take her out of her home and she was still talking about them. The

people disappeared with the Geodon for about a year. It sedated her,

adn slowed her down a bit. But in my mind it was worth the trade off.

The " people " came back a few months ago and her psychiatrist starteed

tweaking her meds but she was unresponsive. We took the

psychiatrists' suggestion to admit her to the hospital. I am not so

sure it was the best idea. She developed neuroleptic malignant

syndrome and had a close call with death. The docs think she should

never be on any antipsychotic again. The dementia was really kicked

up before she went into the hospital. But I can't help wonder what

she would be like if she were able to take an antipsychotic again, as

she seems more demented than ever right now.

I plan to seek another doctors opion when she gets out.

If you haven't tried Geodon, you might want to consider it for the

hallucinations. It really helped my mom.

Kim, daughter of , 72, Detroit

September 7, 2007

Is there any possibility that the Geodon (a

neuroleptic) may have caused the NMS? When they

tweaked her meds, what did they give her that may have

caused the NMS?

Just curious.

--- " Kim K. " wrote:

> Hi Dawn.

>

> Thanks for sharing your story with us. Your mom

> sounds like my mom in

> so many ways, especially the hallucinating part.

> Your mom is lucky to

> have so many caregivers!

>

> FOr over a year, my mom lived in her own apartment

> with other senior

> citizens. She went down to lunch and dinner and

> occasionally

> participated in activities.

>

> This was only possible because she was on 160 mg

> daily of Geodon, an

> atypical antipsychotic that worked wonders for my

> mom. We tried

> Risperdol and Seroquel previously and neither

> helped. Geodon was a

> God-send. My mom was having combative conversations

> with the " people "

> in her basement. It was a constant battle she had

> with them. We would

> take her out of her home and she was still talking

> about them. The

> people disappeared with the Geodon for about a year.

> It sedated her,

> adn slowed her down a bit. But in my mind it was

> worth the trade off.

>

> The " people " came back a few months ago and her

> psychiatrist starteed

> tweaking her meds but she was unresponsive. We took

> the

> psychiatrists' suggestion to admit her to the

> hospital. I am not so

> sure it was the best idea. She developed neuroleptic

> malignant

> syndrome and had a close call with death. The docs

> think she should

> never be on any antipsychotic again. The dementia

> was really kicked

> up before she went into the hospital. But I can't

> help wonder what

> she would be like if she were able to take an

> antipsychotic again, as

> she seems more demented than ever right now.

>

> I plan to seek another doctors opion when she gets

> out.

>

> If you haven't tried Geodon, you might want to

> consider it for the

> hallucinations. It really helped my mom.

>

> Kim, daughter of , 72, Detroit

>

________________________________________________________________________________\

____

Moody friends. Drama queens. Your life? Nope! - their life, your story. Play

Sims Stories at Yahoo! Games.

http://sims.yahoo.com/

September 7, 2007

Neither Geodon nor Seroquel are neuroleptic - they are atypical.

Geodon isn't studied in DLB or PDD that I'm aware of, and it is

structurally rather different and targets different receptors than

Risperdal/Clozaril/Seroquel/Zyprexa. That's not saying it's bad,

that's saying it's an unknown.

E

September 8, 2007

Hi Kim

Thank you for your reply, Mum already takes Quetiepine which is (I

think) another name for Serequel, atypical antipsycotic and she

doesn't struggle with the hallucinations lately. Although she stills

sees people, they don't frighten her like they did this time last

year.

It's more the mobility side of things we have problems with. Thursday

she could barely walk nor weight bare then yesterday she's in a

completely different place, still struggling bot not nearly so much

and no pain where Thursday she couldn't stand the pain...*shrug*

She's actually here with us now and although her mood is quite low,

on the whole seems good.

She has five children and of course with this comes politics! I

believe something has happened this week...could be a delusion, could

have really happened time will tell. But we've had times like this

before and it takes a long time to get to the bottom of things. Of

course we keep our eye on things such as infections and pain control,

but generally its something to do with money (which she doesn't have

a great deal of but enough to live comfortably) or some other

triviality that this family get themselves caught up in.

For ten years of our married life we only saw the other siblings at

family occassions but of course with Mum's care being important to us

we have been dragged back to the fold, so to speak.

Anyway enough of that. I said at the beginning of my commitment to

Mum that I would continue to care for her until she tells me she

didn't want me to anymore, that I do what I do because I can and

because I want to. No matter what other people think or say those are

my reasons, its just upsetting that it upsets her.

Dawn

>

> Hi Dawn.

>

> Thanks for sharing your story with us. Your mom sounds like my mom

in

> so many ways, especially the hallucinating part. Your mom is lucky

to

> have so many caregivers!

>

> FOr over a year, my mom lived in her own apartment with other

senior

> citizens. She went down to lunch and dinner and occasionally

> participated in activities.

>

> This was only possible because she was on 160 mg daily of Geodon,

an

> atypical antipsychotic that worked wonders for my mom. We tried

> Risperdol and Seroquel previously and neither helped. Geodon was a

> God-send. My mom was having combative conversations with

the " people "

> in her basement. It was a constant battle she had with them. We

would

> take her out of her home and she was still talking about them. The

> people disappeared with the Geodon for about a year. It sedated

her,

> adn slowed her down a bit. But in my mind it was worth the trade

off.

>

> The " people " came back a few months ago and her psychiatrist

starteed

> tweaking her meds but she was unresponsive. We took the

> psychiatrists' suggestion to admit her to the hospital. I am not so

> sure it was the best idea. She developed neuroleptic malignant

> syndrome and had a close call with death. The docs think she should

> never be on any antipsychotic again. The dementia was really kicked

> up before she went into the hospital. But I can't help wonder what

> she would be like if she were able to take an antipsychotic again,

as

> she seems more demented than ever right now.

>

> I plan to seek another doctors opion when she gets out.

>

> If you haven't tried Geodon, you might want to consider it for the

> hallucinations. It really helped my mom.

>

> Kim, daughter of , 72, Detroit

>

September 8, 2007

Dawn:

Family drama always makes this an order of magnitude harder. You have

my deepest sympathies.

E

September 10, 2007

Thanks , you're not kidding! but: we plod on.

Dawn

>

> Dawn:

>

> Family drama always makes this an order of magnitude harder. You have

> my deepest sympathies.

>

> E

>

September 10, 2007

Hello again Kim

I just re-read your reply and realise that I didn't respond very well

to you, for which I am truly sorry (been a *bad* weekend-always hits

at the weekend don't you think?)

I'm not sure about what neuroleptic malignant syndrome means, is this

an unresponsive episode? Because our Mum used to have these quite

frequently so much so that we thought she'd had a stroke and on

several occassions she was hospitalised. Then we'd have a job to get

her back home and to the place she was before the episode. After

reading and taking advice from the LBDA forum we realised this was

part of the illness and the next time it happened we didn't panic and

within 30 minutes she came back around as if nothing had happened. We

were directed to the Boeve contiuum and instigated an appointment

with her psychiatrist who prescribed Provigil and since then (July

25th) there have been no more of these episodes and she is able to

stay 'awake' during the day and sleeps like a baby at night (touching

wood)...

Have you thought of using Provigil...sorry I haven't had time today

to look back, maybe it would be worth suggesting.

Good luck

Dawn

>

> Hi Dawn.

>

> Thanks for sharing your story with us. Your mom sounds like my mom

in

> so many ways, especially the hallucinating part. Your mom is lucky

to

> have so many caregivers!

>

> FOr over a year, my mom lived in her own apartment with other

senior

> citizens. She went down to lunch and dinner and occasionally

> participated in activities.

>

> This was only possible because she was on 160 mg daily of Geodon,

an

> atypical antipsychotic that worked wonders for my mom. We tried

> Risperdol and Seroquel previously and neither helped. Geodon was a

> God-send. My mom was having combative conversations with

the " people "

> in her basement. It was a constant battle she had with them. We

would

> take her out of her home and she was still talking about them. The

> people disappeared with the Geodon for about a year. It sedated

her,

> adn slowed her down a bit. But in my mind it was worth the trade

off.

>

> The " people " came back a few months ago and her psychiatrist

starteed

> tweaking her meds but she was unresponsive. We took the

> psychiatrists' suggestion to admit her to the hospital. I am not so

> sure it was the best idea. She developed neuroleptic malignant

> syndrome and had a close call with death. The docs think she should

> never be on any antipsychotic again. The dementia was really kicked

> up before she went into the hospital. But I can't help wonder what

> she would be like if she were able to take an antipsychotic again,

as

> she seems more demented than ever right now.

>

> I plan to seek another doctors opion when she gets out.

>

> If you haven't tried Geodon, you might want to consider it for the

> hallucinations. It really helped my mom.

>

> Kim, daughter of , 72, Detroit

>

September 10, 2007

Ron and Kim,

I think the neuroleptic malignant syndrome means the problem effects the

nerves, and of course the mind is the " nerve center " for operating our whole

system. Malignant means it keeps going on out of bounds. A very dangerous

situation. The person goes into an irreversible down hill spiral of no return,

unless the medication is stopped in time.

I explained it in very simple terms, but someone with more knowledge on

these things will be able to explain it.

My husband was given Risperdal. He was getting very sick within two weeks.

Bad chest pain with his heart, and acting like a Zombie. He was becoming

totally dysfunctional. I was afraid it was going to kill him, because he has a

bad

heart already. I was getting up every night trying to stop his pain, and

crawling in bed with him to comfort him. I weaned him off it because I couldn't

reach the doctor. Our new doctor said I did the right thing. I honestly

believe it would have killed him if I hadn't taken him off the medicine.

Love a bunch,

Imogene

In a message dated 9/10/2007 9:45:39 AM Central Daylight Time,