Re: apology

[Guest guest]

Kay,

I can only guess that your message was lost in the system

somewhere. Send it to me and I will post it to the list.

(Chronic_pain@...)

Secondarily, you need not feel that you owe the list an apology for

your choice of words. Many others have also said that the return

of pain as a particular medication wore off was " withdrawal. " I

only meant to point out that the control of pain and the return of

pain at the end of the length of time the medicine worked are

neither signs of addiction, just signs that the medication was

working and now its time for another dose.

You always have such interesting and supportive messages, freely

sharing of your own experiences and knowledge. You don't have any

reason to apologize. My response was not to your message (which I

did see, but have no idea where it went) just to the large number

of posts that had used " withdrawal " in the way described above.

I sent the post you had as an attachment to the list. You have not

been dropped from the list. Do you get other messages from the

group or have all messages stopped coming to you?

If there is a glitch in the system concerning your subscription

confirm it for me and let me know. I'll send this note to you at

your personal email address and through the list. If you don't

receive two copies from the above sources let me know and I'll try

to find out what's going on.

In all likelyhood I probably made a mistake...which wasn't my

first, and probably won't be my last. We've had so many changes as

the list server has been bought out a couple of times and the way

we post messages keeps changing.

Looking forward to your continued participation on the list,

Ray

[Guest guest]

Thanks for your nice message. I seem to receiving messages today. Don't

know what that " Alabama " group thing was about. Kay

M. Kay

kayfrank3@...

Re: apology

Kay,

I can only guess that your message was lost in the system

somewhere. Send it to me and I will post it to the list.

(Chronic_pain@...)

Secondarily, you need not feel that you owe the list an apology for

your choice of words. Many others have also said that the return

of pain as a particular medication wore off was " withdrawal. " I

only meant to point out that the control of pain and the return of

pain at the end of the length of time the medicine worked are

neither signs of addiction, just signs that the medication was

working and now its time for another dose.

You always have such interesting and supportive messages, freely

sharing of your own experiences and knowledge. You don't have any

reason to apologize. My response was not to your message (which I

did see, but have no idea where it went) just to the large number

of posts that had used " withdrawal " in the way described above.

I sent the post you had as an attachment to the list. You have not

been dropped from the list. Do you get other messages from the

group or have all messages stopped coming to you?

If there is a glitch in the system concerning your subscription

confirm it for me and let me know. I'll send this note to you at

your personal email address and through the list. If you don't

receive two copies from the above sources let me know and I'll try

to find out what's going on.

In all likelyhood I probably made a mistake...which wasn't my

first, and probably won't be my last. We've had so many changes as

the list server has been bought out a couple of times and the way

we post messages keeps changing.

Looking forward to your continued participation on the list,

Ray

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[Guest guest]

Many others have also said that the return

of pain as a particular medication wore off was " withdrawal. "

In my instance, it was withdrawal. When I stopped the duragesic patch

suddenly, it wasn't just experiencing the pain more, by the next

night I actually felt like I was crawling out of my skin it was

unbearable. I never want to feel that way again. The pharmacist said

that this was my body 'craving' the chemicals it had gotten used to

being there; while this makes sense to me in theory I told her I in

no way crave a medication that is not helping my condition which at

that point it was not in any case (why I called the pain management

doctor) and I wouldn't ever use it even if it were effective if I

don't have the reassurance that a doctor would be following me to

make sure this never happens again. I will not ever stop taking a

medication like that again if I can help it. I didn't know what could

happen.

[Guest guest]

In a message dated 3/2/2003 11:48:23 AM Pacific Standard Time, jancea@...

writes:

> Now Arthur, I said play nice...I said nothing about taking your ball

> and going home.

>

> Again...Motherly hugs.

>

> Jan

> in very sunny Sacramento CA

Jan -- I got a huge laugh from that. " Taking your ball and going home " LOL

LOL LOL

Joni

[Guest guest]

< " Arthur wrote: I will keep my comments to myself in the future.>

Now Arthur, I said play nice...I said nothing about taking your ball

and going home.

Again...Motherly hugs.

Jan

in very sunny Sacramento CA

[Guest guest]

Arthur,

I really meant no animousity towards you at all. However, I admit

that you got under my skin, as you appeared to be attacking the

scientific community of which I am a part. Also, in your initial e-

mail to the group, you seemed to be tapping into their anger at the

slowness of science to find a " cure " and preying on their fears that

the scientific community is somehow " holding out " on them. Lastly,

it seemed like you were providing them with " the answer " to their

prayers w/o talking about the risks/benifits of " the answer. " So, I

do apologize if my toned seemed a little harsh, when I was pointing

out the flaws (visible to me) in your assertions. I was just, and I

admit I still am, somewhat suspicious of your true intentions.

As I said earlier, I do applaud your efforts (if your intentions are

genuine). I really think you should submit a grant application, get

funded, and bring your treatment into the arena of mainstream

medicine so all can benifit. It would be wonderful if the treatment

you proposed worked, and the only way to know would be to do some

well-structured research. I was just asking for the data that

supported your assertions, as I tend to question everything without

at least some evidence to the contrary. It's in my nature, due to

what I've witnessed in this field... Truthfully, I didn't mean

to " piss you of " in asking for this evidence.

My initial comments to the group were " words of caution, " because I

have seen so many " fad " dementia treatments come and go. Knowing

that this group of people have already been through so much, I think

it's very unwise to advocate untested treatments.

The only reason why I took the time out of my weekend to write back,

was because it seems that you have been seriously mis-informed

somewhere along the way with regard to the nature of traditional

western researchers (and what their goals and motivations are). It

would have been nice to see some convincing data (even just a case

study), so that I could better understand your assertions and

beliefs. In any event, if you're interested in getting funded, I

could direct you to the right person to touch-base with at NIH/NIA.

Respectfully,

-Russ

Apology

Sorry, but I guess I was betonf reason. Rus, you're right and I am

sorry to have offended you and so many of the fellow group members

by my position.

Best of luck to you all. I will keep my comments to myself in the

future.

Arthur Hrin

[Guest guest]

I wish he'd come back to the sandbox and play some more... It's

lonely making mud-pies all by yourself!! :) -Russ

Re: Re: Apology

In a message dated 3/2/2003 11:48:23 AM Pacific Standard Time,

jancea@...

writes:

> Now Arthur, I said play nice...I said nothing about taking your

ball

> and going home.

>

> Again...Motherly hugs.

>

> Jan

> in very sunny Sacramento CA

Jan -- I got a huge laugh from that. " Taking your ball and going

home " LOL

LOL LOL

Joni

[Guest guest]

Russ, you truly are a special person!!! Saying I' m sorry when you haven't

done anything takes a special person so I applaud your actions. I have read

all the post from you and Arthur and wondered why he has been so mad. Decided

to stay out and just read, but read your apology this morning and decided it

was time to break the silence.

Right now I don't have questions but please stay around I am sure in the

months ahead I will. So pease don't leave!!!

Thanks

Jayn in S. GA

[Guest guest]

Russ,

I am on not on any side and have a lot of mixed emotions. My Mom is

gone since Oct. But some times when I got so discouraged with the Med

field as it seemed they didn't understand and I knew I didn't have

" time " to wait for what might be, and what they were doing wasn't much

different than anyone else. They were " trying " to see what worked and

used their position to say they " knew best, " and to often I really knew

better because I had seen three years of Mom's reactions to the

situations and meds. Md's wouldn't even listen to me!

So " snake oil " didn't bother me any more than the meds they were trying

to give her. And that doesn't mean I think untried and unfound

solutions are a good idea. It just is so hopless sometimes, anything is

better than nothing or even more harm.

Donna

[Guest guest]

Donna,

Certainly, I can understand your frustration and discouragement with those

in the medical field. It's absolutely true that caregivers know MUCH MORE

about their loved-one's illness than any doctor could hope to -- which is

why a lot of my research entails listening to what caregivers have to say

(Actually, the caregiver interview in my study is about twice as long as the

patient interview/testing.)

A consensus diagnosis re: " What exactly is LBD? " was reached back in 1996.

Unfortunately, many doctors who are working in NH's and even some older

Neurologists who haven't been keeping up with the literature, likely don't

know much about " the beast. " So, I think your observations re: doctors

(especially in nursing homes) are very accurate, as I have had similar

experiences when I've spoken to them as well.

Just a word to others who are feeling frustration w/medical care & their

loved-one's doctor: With what is known about this illness now, if you find

that you're having to education your doctor about LBD and/or aren't being

listening to by your doctor (when you describe your love-one's symptoms and

known reactions to certain meds), then it's time to find another doctor

ASAP. It's important that doctors listen to caregivers, as meds and

treatments for LBD vary widely depending on symptomatology. A doctor who is

familiar with LBD will know the importance of listening to caregivers of the

patient.

I certain understand feeling hopeless and helpless in battling this

illness... That's what makes this forum so great. So, that you know that

you're not alone in your plight.

Thanks for sharing your (rather accurate) observations.

Yours,

-Russ

RE: Apology

Russ,

I am on not on any side and have a lot of mixed emotions. My Mom is

gone since Oct. But some times when I got so discouraged with the Med

field as it seemed they didn't understand and I knew I didn't have

" time " to wait for what might be, and what they were doing wasn't much

different than anyone else. They were " trying " to see what worked and

used their position to say they " knew best, " and to often I really knew

better because I had seen three years of Mom's reactions to the

situations and meds. Md's wouldn't even listen to me!

So " snake oil " didn't bother me any more than the meds they were trying

to give her. And that doesn't mean I think untried and unfound

solutions are a good idea. It just is so hopless sometimes, anything is

better than nothing or even more harm.

Donna

[Guest guest]

I second Jayn. I have read a great deal of valuable information since you have

come online. I would be very upset if you were to stop posting here. I think

that we have the ability to help each other and you are very supportive. We

have been dragged into this horrible experience without choice. You on the

other hand have chosen on your own free will to help and for that I am grateful.

Kath in Canada

Re: Apology

Russ, you truly are a special person!!! Saying I' m sorry when you haven't

done anything takes a special person so I applaud your actions. I have read

all the post from you and Arthur and wondered why he has been so mad. Decided

to stay out and just read, but read your apology this morning and decided it

was time to break the silence.

Right now I don't have questions but please stay around I am sure in the

months ahead I will. So pease don't leave!!!

Thanks

Jayn in S. GA

[Guest guest]

Keep your passion, Valarie.

Zone Nguyen

__________________________________________________