Re: I need a pill RIGHT NOW - debate not war.

[Guest guest]

Gee you guys, now I know why I didn't take debating in school. Sure looks like a war zone to me. Isn't it time we go back to the corner's and come out being a support group again? I know you don't see eye to eye and most likely never will, but I think you both made your point and it's time to shake hands and come out supporting again.

Or should I just skip over your messages and miss something that would be of help. It's up to you. I really can use the support from both of you, but this isn't getting anywhere and it's only turning alot of the group off.

Please !

Hugs Vera

[Guest guest]

,

I am NOT trying to drive You or ANYONE off the list. When someone makes

a statement or email and submits it as FACT, I believe the list should have

all the facts (or at least other opinions) and not only the opinion of one

or two people. As to my caregiving abilities, I do not think my caregiving

experience is outdated (but that is only MY opinion). If I feel I can no

longer give people good advice, I either ignore the question or push them

toward a person on the list with more experience. Barb Sellect and Barb

seem to do the same thing in my opinion and they also lost their loved

ones to MSA and LDB. Their experience is also valuable. I differ to

Fisher often on sleep apnea as he is far more knowledgeable in that area.

I have disagreed with many people on the list to give cautionary info. I

took your word and signed the petition to get Deborah into the LA study for

a transplant - becuse the two of you felt it was best and I knew nothing

about it.

I agree wholeheartedly with your statements:

"The patients and caregivers need all the ammunition they can muster up to assist them in helping themselves or those that they love."and"the purpose of a support group is to help and DO NO HARM!" You quoted a commentary (not a news article) from a Canadian newspaper called the National Post. I am NOT familiar with that newspaper so I went to the newspaper and read the whole article (and some other articles by the same author). She states in the article "I am hazarding the guess -- based on my own experience and the California lawsuit -- that psychiatrists and physicians are not presenting all information to patients and allowing them to weigh the risks. Do you HONESTLY believe her psychiatrist told her "Nor, by his own admission, does he know how the drug works or what the long-term impact on my body chemistry might be." The suit is based on 35 people - how many people in the USA take Paxil - a million?

35 parts in one million is a very low percentage. She does a disservise to readers by implying that all doctors are pill pushers (see bold above). Many doctors DO tell you the downside of treatment - you state that your surgeon is a top doctor - didn't he tell you the downside of Deborah's brain surgery in advance? ALL of my and Charlotte's surgeons over the years told us the downside, so we could choose wisely. In some cases we postponed surgery until we could get second opinions. I DO agree that some doctors give out pills too readily - especially painkillers and antidepressants.Now back to your statement "Do NO Harm" we have over 700 people on the list, most diagnosed with some sort of brain disorder or a caregiver. How many do YOU feel might be missdiagnosed? Could it be 7? Or less? I have seen NO doctor that claims PET is accurate all the time and studies that say it is right up to 83% of the time BUT that is not against autopsy r

eports yet. Let's assume 67% of the people on the list REALLY have an incurable brain disorder AND that their doctors are working to help them as best they can Do you really believe it does them good to question their doctor's judgement? Note too that that would mean about 475 people who actually have the disorder (of some sort) and 1 or 2 MIGHT decide to stop taking their drugs based on this "information"? I was chatting last night with a woman who says she does not have "ON" and "OFF" periods from Sinemet - BUT if she does not take it for 2 days - she can not move. If she goes back on it, she regains movement and can walk somewhat. Her doctor is working with her to adjust her medicines - should she ignore her doctor? I personally feel she has a good doctor. She too was first diagnosed as PD and now it is MSA (probable).I am sorry, but I still feel people on the list should use the brains God gave them and common sense to determine for themselves if their doc

tor is doing right by them. Read ALL the info on the RX sheet and understand it. If you don't understand it ask the doctor, if they can not explain it to your satisfaction - then it is time to ask the list or look for another doctor. BUT don't run down all doctors for the mistakes of one or two. Remember that half of all doctors were in the lower 50% of their class and that one in ten were in the lowest 10% of their class :-) They may be doing their best, so give them a break, I personally have more faith in doctors as a whole than newspaper columnists as a whole.You accuse me of not knowing how to care for a MSA patient anymore and therefore harming patients. How am I harming patients? I have NEVER disagreed with you that they should become well informed. I have NEVER said that PET scans were bad - I HAVE said they were not necessary for a diagnoses (even for Chiari)as most here have NOT had them and DO have a brai

n disorder such as MSA, LBD, PSP, CBGD, PD, PAF, POTS, etc. Okay some of these disorders allow you more years of life than others, but I also tell people to live each day for itself and not to worry about tomorrow - if you have one of the "better" disorders - be thankful for the added years - I am sure Ken was thankful for his added years and I know Barb was. Charlotte was happy that she had more years than "normal". I have said that if people can afford it - get a PET scan, BUT it will not cure you. I personally would rather put the money in to see a specialist in movement disorders and autnomic failure. You disagree and are putting your faith in new technology - BUT new technology also says a cure for PD will most probably come from embryonic stem cell research. I am saying that we need to test new technology before we claim anything. Stem cell research NEEDS to be tested and so does PET technology.This debate is open to anyone, but let's keep it

as unemotional as possible. Please do not attack either of us as I am not offended by discussion of a subject. If we can keep this discussion on a professional level, it may help many of you understand the complexity of brain disorders. If I, or drift into areas you do not understand ASK us to explain our debate more and lead us to the part you do not understand. I consider this an intellectual debate and not a war. Peace :-) Take care, Bill Werre

[Guest guest]

Well, to answer your first question, YOU HAVE............and please don’t

bring Barb Sellect and Barb into a confrontation that belongs to you

and I. They are very good and wonderful people and should be afforded the

luxury of being left out of this. This has nothing to do with them.

I thank you for signing the petition for Deborah but that has nothing to do

with what I wrote.

I will tell you that even the Notable Doctor Levesque's was also wrong with

his Dx, but at least he had the smarts to question his own Dx and order a

PET, Why, in his own words. This will either prove or disprove my Dx. and

we can always do surgery, but never undo our surgery.

Yes Bill, I do believe that actually most doctors have no clue to what they

are giving you.. I say this with some reservation. How are they supposed

to know all there is to know, especially Drug interactions with one another.

Your going to tell this list that Doctors know all about these drugs, now

come on Bill, you know that is not TRUE. Heck, most of the drugs that they

use are drugs that some drug salesman has come in and given to them for them

to try on their patients. And they also tell the doctor what its used for...

It is up to the doctor to read and study the +s and -'s of these, and with

all their lack of time how would you expect them to really know, must less

keep up to date.

Lets address something else. You have posted many times that I and or

Deborah have told people to stop taking their DUUGS. That is a flat out

LIE, we, me or she, have never, ever told anyone to STOP TAKING THEIR DRUGS.

So get off of it..

As far as the article is concerned, It was reading material only, and yes,

you should hear about these things, we're not living in the dark ages any

more.. It's the 21st century, not the Stone Age. I see a lot of post and

read a little and than if I am no longer interested I hit that great button

called " DELETE " .

As far as Doctors Grades are concerned, I have no idea what ranking

Dr Jankovic in Huston Tx was, or Dr Leveque's in Los Angles was but I do

know one thing, they are excellent and well know Doctors and both were

WRONG.......................................

I have never said every Doctor was bad, I said and I think I proved it by

some actual medical research links given here on this list that show that at

least 20% of patients are MISDIANOSED.

Bill, you still don’t get it. So let’s leave it at that, you have the right

to say what you want and I have the same. You believe in proof, well, than I

guess you must have felt that way back when the MRI's were being questioned.

By the way, I see you took the time to address my statistics but you never

addressed what you did to my wife. I was hoping that you had the character

to apologize, but I guess that would be too much. What about Deborah, She

has more right than you or I to be part of this list and yet you care not to

even bring her up.

I want to say I am sorry to all of you on this list for having to bring any

of this up, but if Bill is going to explore this than I must too, I would

really like to hear from you, do you think what has happen to Deborah on

this list is fair?????

God Bless YOU ALL,

" tenacity's man "

>

>Reply-To: shydrager

>To: shydrager

>Subject: Re: " I need a pill RIGHT NOW - debate not war.

>Date: Thu, 26 Sep 2002 11:53:54 -0400

>

>,

>

>I am NOT trying to drive You or ANYONE off the list. When someone makes a

>statement or email and submits it as FACT, I believe the list should have

>all the facts (or at least other opinions) and not only the opinion of one

>or two people. As to my caregiving abilities, I do not think my caregiving

>experience is outdated (but that is only MY opinion). If I feel I can no

>longer give people good advice, I either ignore the question or push them

>toward a person on the list with more experience. Barb Sellect and Barb

> seem to do the same thing in my opinion and they also lost their

>loved ones to MSA and LDB. Their experience is also valuable. I differ to

> Fisher often on sleep apnea as he is far more knowledgeable in that

>area. I have disagreed with many people on the list to give cautionary

>info. I took your word and signed the petition to get Deborah into the LA

>study for a transplant - becuse the two of you felt it was best and I knew

>nothing about it.

>

>I agree wholeheartedly with your statements:

>

> " The patients and caregivers need all the ammunition they can muster up to

>assist them in helping themselves or those that they love. "

>

>and

>

> " the purpose of a support group is to help and DO NO HARM! "

>

>You quoted a commentary (not a news article) from a Canadian newspaper

>called the National Post. I am NOT familiar with that newspaper so I went

>to the newspaper and read the whole article (and some other articles by the

>same author). She states in the article " I am hazarding the guess -- based

>on my own experience and the California lawsuit -- that psychiatrists and

>physicians are not presenting all information to patients and allowing them

>to weigh the risks. Do you HONESTLY believe her psychiatrist told her

> " Nor, by his own admission, does he know how the drug works or what the

>long-term impact on my body chemistry might be. " The suit is based on 35

>people - how many people in the USA take Paxil - a million? 35 parts in

>one million is a very low percentage. She does a disservise to readers by

>implying that all doctors are pill pushers (see bold above). Many doctors

>DO tell you the downside of treatment - you state that your surgeon is a

>top doctor - didn't he tell you the downside of Deborah's brain surgery in

>advance? ALL of my and Charlotte's surgeons over the years told us the

>downside, so we could choose wisely. In some cases we postponed surgery

>until we could get second opinions. I DO agree that some doctors give out

>pills too readily - especially painkillers and antidepressants.

>

>Now back to your statement " Do NO Harm " we have over 700 people on the

>list, most diagnosed with some sort of brain disorder or a caregiver. How

>many do YOU feel might be missdiagnosed? Could it be 7? Or less? I have

>seen NO doctor that claims PET is accurate all the time and studies that

>say it is right up to 83% of the time BUT that is not against autopsy

>reports yet. Let's assume 67% of the people on the list REALLY have an

>incurable brain disorder AND that their doctors are working to help them as

>best they can Do you really believe it does them good to question their

>doctor's judgement? Note too that that would mean about 475 people who

>actually have the disorder (of some sort) and 1 or 2 MIGHT decide to stop

>taking their drugs based on this " information " ? I was chatting last night

>with a woman who says she does not have " ON " and " OFF " periods from Sinemet

>- BUT if she does not take it for 2 days - she can not move. If she goes

>back on it, she regains movement and can walk somewhat. Her doctor is

>working with her to adjust her medicines - should she ignore her doctor? I

>personally feel she has a good doctor. She too was first diagnosed as PD

>and now it is MSA (probable).

>

>I am sorry, but I still feel people on the list should use the brains God

>gave them and common sense to determine for themselves if their doctor is

>doing right by them. Read ALL the info on the RX sheet and understand it.

>If you don't understand it ask the doctor, if they can not explain it to

>your satisfaction - then it is time to ask the list or look for another

>doctor. BUT don't run down all doctors for the mistakes of one or two.

>Remember that half of all doctors were in the lower 50% of their class and

>that one in ten were in the lowest 10% of their class :-) They may be

>doing their best, so give them a break, I personally have more faith in

>doctors as a whole than newspaper columnists as a whole.

>

>You accuse me of not knowing how to care for a MSA patient anymore and

>therefore harming patients. How am I harming patients? I have NEVER

>disagreed with you that they should become well informed. I have NEVER

>said that PET scans were bad - I HAVE said they were not necessary for a

>diagnoses (even for Chiari)as most here have NOT had them and DO have a

>brain disorder such as MSA, LBD, PSP, CBGD, PD, PAF, POTS, etc. Okay some

>of these disorders allow you more years of life than others, but I also

>tell people to live each day for itself and not to worry about tomorrow -

>if you have one of the " better " disorders - be thankful for the added years

>- I am sure Ken was thankful for his added years and I know Barb was.

> Charlotte was happy that she had more years than " normal " . I have said

>that if people can afford it - get a PET scan, BUT it will not cure you. I

>personally would rather put the money in to see a specialist in movement

>disorders and autnomic failure. You disagree and are putting your faith in

>new technology - BUT new technology also says a cure for PD will most

>probably come from embryonic stem cell research. I am saying that we need

>to test new technology before we claim anything. Stem cell research NEEDS

>to be tested and so does PET technology.

>

>This debate is open to anyone, but let's keep it as unemotional as

>possible. Please do not attack either of us as I am not offended by

>discussion of a subject. If we can keep this discussion on a professional

>level, it may help many of you understand the complexity of brain

>disorders. If I, or drift into areas you do not understand ASK us

>to explain our debate more and lead us to the part you do not understand.

>I consider this an intellectual debate and not a war. Peace :-)

>

>Take care, Bill Werre

>

>

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